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I must first say that I'm not struggling with lupus but it's struggling with me! I say that because I refuse to be this thug's victim!
I can't remember when lupus moved in with me and refused to leave but since being diagnosed, lupus has learned to live by my house rules most of the time.
Though my lupus wasn't diagnosed until I was around forty, the symptoms appeared when I was under ten years of age. It started with sore throats. My parents would take me to the doctor when I complained but was always told it was nothing but a sore throat. When my parents asked did I need my tonsils removed because of the frequency of the sore throats, the doctor said nothing was wrong with my tonsils. In college, the exhaustion kicked in. I would be full of energy and going about the day achieving goals when my body would crash from exhaustion. I had to stop what I was doing to wait until my body generated enough energy for me to walk to my car and drive home, and during the drive I would tell myself I wasn't that far from home and I could make it. The butterflies appeared while I was a teen but never on the face and would always disappear a day or two before the doctor's appointment, the sly 'wolf'.
Before being diagnosed, when my body crashed and my thoughts skewed, I thought I was going crazy because I would forget things and never remembered forgetting them. Some of you are probably laughing thinking I'm making a joke but those who have been through this can relate. We all sometimes forget where we placed our keys but the memory will usually come back later but with me, the memory never resurfaces. When friends or relatives would tell me, "Oh you must have forgotten, again," I thought they were trying to pull one over me. Another curious thing that happened is a quarter sized depression and bald spot appeared in my head. Before that, bald spots appeared on both temples and on the peak of my forehead. The dermatologists said the baldness was caused by Alopecia areata for which there is no cure. I totally ignored the two opinions because my hair always grew back.
One day I was sitting with a friend who noticed the butterfly across my nose. She said, "That spot across your nose has been there for quite a while and I think you should have it checked because it looks a lot like the spots I had before being diagnosed with skin cancer." At my friends suggestion, I made a doctors appointment. A few days before the appointment my body crashed in a different way! All my joints started to ache and walking was nearly impossible. On the day of the appointment I was in great pain and so exhausted it took all I had to walk from the car to the clinic. On that day I decided I wouldn't leave the doctor's office until they made a diagnosis. Fortunately, we were military so every doctor of every specialty was located in the same building.
I started with my primary doctor who said she knew what it wasn't but didn't know what it was. She called in an internist and he said the same thing. They called in the head of the department and he said he didn't know what it was and told my primary doctor to send me to dermatology. The dermatologist looked at me and said, "I think I know what it is but I can't make a diagnosis until after I've run tests." Every day for five days I went to the hospital and gave blood. A few days later, the dermatologist called me and told me to come in because she could now make a diagnosis.
My dermatologist told me I had an autoimmune illness called Discoid lupus erythematosus and Subacute cutaneous lupus erythematosus. I was so relieved that my illness now had a name I signed in relief. Then I thought to ask her, am I'm going to die? She said eventually but not today. I enjoyed her sense of humor in case you're wondering. I asked her if I was going to die from lupus? She said no. She prescribed Plaquenil which I took for a few years before stopping. While on Plaquenil I couldn't stay awake and would fall asleep anyplace—I learned not to sit down when not in a safe place. The worse part of the Plaquenil therapy was it affected my thought process. I would be driving and aware of my surroundings but had no idea how to get to where I was going, or where I was going, or how to get back home. I would have to pull into a parking lot and sit until my brain started functioning again. I knew I had to replace the Plaquenil with something else and I chose not to make steroids an option,
Shortly thereafter, my body crashed and it took a few years to get my health back. I scoured the Internet and the local library for every bit of information I could find on lupus when I came across www.mercola.com. I learned about alternative therapies and the significance of diet and environment change. I reintroduced my body to fish oil; my mother had given us cod liver oil every morning when we were children. She also gave us a shot of Morgan David wine every morning to build the iron in our blood.
I read how a lot of illnesses are not illnesses at all but vitamin deficiencies something, the majority of doctors never check before making a diagnosis or before prescribing toxins a/k/a medications. In addition to fish oil I included CoQ-10, Ester-C, E-400, Burdock Root, Selenium, B-50, magnesium, and Valerian Root when I can't sleep. I changed my diet and removed all toxic relationships from my life, including changing employment to manage stress. A few months after changing my therapy from a toxic one to a natural one, my body begun to heal.
My body still crashes but not as often and I bounce back in a shorter period of time.
The Many Shades of Lupus (NIAMS)
►Systemic lupus erythematosus (SLE) is the form of the disease that most people are referring to when they say "lupus." The word "systemic" means the disease can affect many parts of the body.
►Discoid lupus erythematosus is a chronic skin disorder in which a red, raised rash appears on the face, scalp, or elsewhere.
►Subacute cutaneous lupus erythematosus refers to skin lesions that appear on parts of the body exposed to sun. The lesions do not cause scarring.
►Drug-induced lupus is a form of lupus caused by medications. Many different drugs can cause drug-induced lupus.
►Neonatal lupus is a rare disease that can occur in newborn babies of women with SLE
Lupus is an autoimmune disease. Your body's immune system is like an army with hundreds of soldiers. The immune system's job is to fight foreign substances in the body, like germs and viruses. But in autoimmune disease, the immune system is out of control. It attacks healthy tissues, not germs. "The Many Shades of Lupus" by the National Institutes of Health, p. 2.
http://www.niams.nih.gov/Health_Info/Lupus/default.asp
http://www.lupus.org/newsite/index.html
http://www.butyoudontlooksick.com/medical_info_links/lupus_information/
http://kidney.niddk.nih.gov/kudiseases/pubs/lupusnephritis/
http://www.lupusalliance.org/mission_statement.asp
http://lupusresearchinstitute.org/index.php?q=research
http://www.wrongdiagnosis.com/l/lupus/misdiag.htm
http://www.lupusinternational.com/join/benefits.aspx
http://www.aad.org
http://www.aaos.org
http://www.rheumatology.org
http://www.aarda.org
http://www.arthritis.org
http://www.lupusny.org
Please visit the following sites to see what skin lupus look like.
http://dermnetnz.org/immune/cutaneous-lupus.html
http://www.aocd.org/skin/dermatologic_diseases/discoid_lupus_eryt.html
